Accuracy of MRI in Diagnosing MS
 

This is slightly dated, but I think the info is good to share anyway:

Questions Over Accuracy of MRI in Diagnosing Multiple Sclerosis (press release)

Posted Monday, August 14, 2006 by NewsTarget, Key concepts

Questions over accuracy of MRI in diagnosing multiple sclerosis
Accuracy of magnetic resonance imaging for the diagnosis of multiple sclerosis: systematic review BMJ Online First

The accuracy of magnetic resonance imaging (MRI) is not sufficient to rule in or rule out a diagnosis of MS with a high degree of certainty, finds a study published online by the BMJ today.

MRI has been adopted in England and Wales by the National Institute for Health and Clinical Excellence (NICE) as part of the recommended criteria for diagnosing multiple sclerosis. Although its accuracy has been assessed, the evidence has not previously been systematically assessed.

Researchers analysed 29 studies to assess the accuracy of magnetic resonance imaging criteria for the early diagnosis of multiple sclerosis in patients with suspected disease. Each study compared MRI criteria to a reference standard for the diagnosis of multiple sclerosis. The average duration of follow-up ranged from seven months to 14 years.

Considerable weaknesses existed in the studies included in the review, and studies with methodological flaws overestimated the diagnostic accuracy of MRI.

Only two studies followed patients for more than 10 years, and these suggested that the role of magnetic resonance imaging either in ruling in or ruling out multiple sclerosis is limited. Patients with a first attack suggestive of MS have around a 60% probability of developing MS, this is increased to between 75 and 84% in those with a positive MRI scan and decreased to between 43 and 57% in those with a negative scan over 10-14 years.

The results suggest that use of magnetic resonance imaging to confirm multiple sclerosis on the basis of a single attack of neurological dysfunction may lead to over-diagnosis and over-treatment.

“There is a real danger of giving patients a serious diagnosis which will affect their lives but may turn out to be incorrect later on,” says Penny Whiting.

Dr Jonathan Sterne adds: “Neurologists should discuss potential consequences of false positive and false negative magnetic resonance imaging results with their patients.”

http://www.newstarget.com/019977.html

This 'smells' very much to me, as propaganda the British 'penny pinching' health system is putting out to avoid the expense of doing MRI's on suspected MS patients and thereby avoiding having to give people the CRABS!

That's an interesting way to look at it, Chez.

I guess I was thinking more along the lines of people NOT getting the proper dx of MS because the MRI didn't show enough accuracy of information.

There was a study done with that focus, and it was determined that very few lesions were visible on an MRI, in certain parts of the brain. They were able to confirm this by reviewing the MRI's (taken prior to death) to the autopsy results.

http://www.ajnr.org/cgi/content/abstract/26/3/572

Cherie

Since I am not a scientist, I don't pretend to understand most of the articles I read.

What I am looking for is how they dx the 5% of MSers who don't show lesions. I kind of wonder if it isn't more than 5%. One never sees articles on MSers who don't show lesions, just atrophy.

Limboland is he^^. Having an MS dx recinded must be much worse though. If the bathtub test was the only criteria then some of us would be out of limboland for sure. :rolleyes:

good thread
 

cricket,

They can give a clinical diagnosis in someone who has no lesions on MRI. I have been told that I fulfill the clinical criteria for definite MS.

A clinical diagnosis can be established if their is evidence for lesions disseminated in space and time. They tend to rely heavilly on things that aren't fakeable. They worry way too much about people faking symptoms.

My eyes, for example, show clinical evidence of lesions disseminated in space and time. I developed optic disc pallor a number of years after I developed an eye-traction problem (bilateral INO). The optic disc pallor indicates an optic nerve lesion. The eye traction indicates a brainstem lesion. So, there are lesions in two different locations, and they happened at different times.

There is a lot of caution out there against giving a definite diagnosis to someone in whom all of the tests have been negative. It's really up to the doctor what tests they need to show positive for a definite diagnosis if the person has shown clinical evidence of lesions disseminated in space and time.

There seems to be such conflict between giving an early diagnosis and doing the 'watching and waiting' thing to see what develops. It really seems to be random who gets the diagnosis and who has to wait. This might be why people neuro-shop because we hear stories of people waiting a loooong time without any diagnosis whereas others with seemingly identical circumstances get one right away. Just different doctors, that's the only difference.

Here is the full BMJ article that Cherie's article stems from.

http://bmj.bmjjournals.com/cgi/conte...urcetype=HWCIT

What wannabe said. It seems so arbitrary.

Is a poor patient to believe the "Early Diagnosis and Treatment" mantra you hear almost everywhere in MS Officialdom?

Or is the poor patient to believe the conflicting, seemingly arbitrary, blase, AND/OR dismissive attitudes of many doctors toward those without MRI evidence that screams MS?

(Picture the neurologist leaving the room making the Valley Girl "W" sign... "Whatever!")

Nancy

Early DX and TX, I laugh when I hear those words in reference to any disease. That is what is promoted by hospitals and insurance, but they don't practice it, it's just a media thing.

I've had MRI's showing multiple lesions and progression, and many tests that show some sort of abnormalities, but since I don't show "O" bands I'm dismissed and told I am healthy.

When I stumble, have to push myself to walk a block and have to think about every step I take, and my legs twitch and spasm all day long, well all I can do is shake my head.

Something is wrong, hopefully the Cleveland clinic will be willing to figure out what is wrong.
Pat

Matt:

I had to look up INO. :)

The only eye problems I have is jerkiness of pursuit. Police officers watch for that when they test drunk drivers. I don't drink. I have oscillopsia, double and blurred vision. My optic discs are perfect. Neurogenic bladder, bowel motility problems, spasticity, clonus, slight loss of sensation, fatigue, wide gait, can't do tandem walk, use a cane for distances, ocassional weakness, brain atrophy, normal EVP's - which all add up on clinical exam to soft neurological signs. Yep - great MS mimicker. No lesions. When my leg reflexes tested 4+ I got considerable enjoyment from the look on my PCP's face.

Quality of life seems to be the goal for those with early symptoms. Pain management shouldn't be ignored. In the end, you cannot replace a good MS specialist vs. a 'normal' neuro. Well, at least that is my experience and story and I'm stickin to it. :D


Whatever happened to that promising blood test for MS? It seems to have disappeared from the literature.

I've had two doctors suggest MS to me. One was a internal medical doctor I had seen a few years ago. Then the neuro I'm seeing now has been thinking MS yet when he ordered a new MRI this past month it came back with no lesions.

THO I have to have a talk with this hospital because they said on the report they had NOTHING to compare it to when I have had 1 or 2 other MRI's done there in the past 2-3 years. I HAVE copies of those FILMS AND they DID have lesions on them. I also have copies of films done June of last yr at UCDavis and it had at least 3 lesions on those films. I want to make sure they read the right films and sent the right report of the right person to the neuro.

I have the bladder/bowel problems, right sided weakness, balance problems, use a walker or powerchair for walking, headaches, vision problems, neuropathy, fatigue, lack of sensation in right side mostly. memory problems and other stuff.. I cant think of... Now we think Im also having seizures.

But because this MRI says nothing on it.. He isnt sure what to think now. He wanted me to fax him the reports of the other MRI's. Tho no one has done a lumbar puncture.
GM

This hasn't been the first article I've read about the uncertainty of MRIs when diagnosing MS. I don't think for one minute it's propaganda but simply scientific fact.

Harry

I think what Pat said is only a slight exaggeration. It's just PR, just the party line.

I laugh too. Diagnosis and treatment often don't come until the symptoms and/or test findings are extremely obvious (if then), although many (or most) doctors no doubt try to treat serious symptoms that are affecting the patient's life.

It's telling that after six years of experience with doctors (previously I hardly ever saw them), I was very surprised when my new PCP (my fourth in six years) actually took the initiative to follow up on my cholesterol and blood pressure. All three previous PCPs had talked at the first appointment, said we will follow up, but never brought them up again.

Even such common, important, and perfectly objectively diagnosable problems as blood pressure and cholesterol can get ignored! So why not other diseases? :)

Nancy

I was DX pre-MRIs, by a process of elimination. One hospital stay of a week, with all the blood tests you can imagine and a Myleogram, which showed the telltale protien and O-bands (and no tumour).

I didn't have a MRI, until I was re-DX, after a long remission, 18 years later. My Neuro at the time said that my MRI looked typically MSessy.:rolleyes: I had one more MRI 4 yrs later, that read the same.

You don't need a MRI to DX MS. It's just one of the many tools Docs use in the DX process. Like all tests, if not done under the right circumstances with a knowledgable Doc/Scientist, to read the results, then it could have been a waste of time and money.

I refuse MRIs for MS now as they are unnecessary, once you have been DX. Any MRIs after that are for the Doc's curiosity and of no help to you. IMHO!

Same here Sally, well sort of. The MRI was very new, there were 2 MRIs in the entire state. I had a brain MRI without contrast - contrast wasn't even used at that time, it was clear. I did not have a spine MRI.

I had a LP (positive for o-bands) and right after the LP was a Myleogram (negative), bloodwork, VEP, and x-rays.

I was dx'd based on the positive LP, symptoms and neuro exam.

I think there is too much emphasis placed on the MRI when many were dx'd with MS before the MRI came on the scene.

BTW - My diagnosis has never been in dispute.

It all sounds very familiar cricket. Yep it's pretty scary having multiple neurological symptoms but no definite diagnosis.

This makes so much sense Sally! Especially since MRI's and brain lesions are absolutely NOT indicative of the disease progression. Although it seems some do use MRI's as a way to see if their meds are working. I had no lesions 2 years ago when I had an MRI done. I think when that MRI came back negative, and the LP showed no O-bands, that was when the neuro dismissed me.

Aren't O-bands released episodically? Like when the myelin is actually being destroyed?

I want to say yes but I'm not sure.

I was having an exacerbation when I had my LP. My neuro said my LP might have come out negative had I not been in an exacerbation

There are probably a lot of people who would have been considered really clear-cut cases of MS before there started to be so much emphasis on MRI, but they are now either limbolanders or "sort of limbolanders" like me. I've been told that there would have JUST BEEN NO QUESTION about my diagnosis back before doctors started relying so heavilly on MRI as they do now.

Perhaps we need to go back to the "drop us in a hot bath" method (or even just stick us in the sun for too long)? :p

It would certainly be sure indication for me, but then again, so would exposure to the cold!

It is my understanding that there are generally more O-bands showing when we are in a relapse.

Cherie

Hi it's great to see some friendly names about.:)

From 98 after admission to hospital with ON and mobility problems they though MS with me.Even after a few nasty attacks my MRI was still normal.My first neuro said 5% of people with MS can have normal MRI'sand LP.Hedischarged me with ME.

As I'd been so poorly my family had already asked GP for a 2nd opinion.Luckily this was 5 weeks after being discharged from first.I saw a well respected European MS Specialist here in the UK.

He examined me and found optic atrophy,nystagmus,brisk jaw jerk,spastic paresis,positive babinski.He wrote in notes "I think this is MS".He admitted me into hospital and for the second time I was given vigourous testing for everything.As it was a teaching hospital I was also examined by many Dr's including neuroPhysiologists.

My VEP's had been abnormal since 98 but optic atrophy showed on MRI.MY SEEP'S showed nerve damage to right arm and leg.MS Specialist came to see me on Friday morning and said he thought it was MS but it was rare.I asked what he meant,he said rare not to show lesions but not to worry as this was usually benign.

Istayed with him for 4 years saw him every 6 months but never once was examined.The only time I was examined was when he was away at a conference and a colleague did the clinic.My legs had been scissoring and back arching so he eamined legs and increased Baclofen to 80mgs.

I then went through nightmare with spasms,loss of mobility etc.He wanted further scans before considering mitox.I deterioated and had to have physios and OT out to home for 6 weeks.I now had crutches and a wheelchair and was referreed to Orthotics for a brace.

After waiting 12 months for scans with NHS mySpecialist intervened andgot angry.Ifinally got scans after15 monthsJune 2006.My scans were once again of brain and cervical spinal cord.I have never had a full spinal MRI or an enhanced MRI.

As my brain scan still only showed optic atrophy I was told it can't be MS.The reason being MRI would have to show changes and after8 years of symptoms all MS patients show cerebellar atrophy.

I was discharged told they know something is wrong they just can't identify it.I haven't seen a Dr since August 2005,apart from GP I lost faith.

I take my Baclofen plus others,fatigue I fight every day and would love 12 hours a day out of bed,mobility and balance are a joke.

The best ismy Dad had bilateral ON and mobility problems,I've been told it can't be genetic.

Very few MS Specialists will now say MS with a negative MRI or a brain MRI only showing optic atrophy.

Goodness Spuggs - you have really been through the wringer! What a horrible experience.

It's no wonder some of us are fed up with doctors and are angry. You deserve better.

I still think MRI's, while necessary, just don't complete the picture for some when they don't show lesions. It's understandable that neuro's don't want to dx without the telltale MRI reports saying lesions because of malpractice suits. But that doesn't help limbolanders.

I'm sorry you have had to go through such terrible pain and suffering. 80 mg of Baclofen should be enough to pin down a dx don't you think?

I remember your story from before, Spuggy. I always get upset when I read that they haven't ordered an MRI of the thoracic region. Is your spinal tap also normal?

You've had to deal with way too much without a diagnosis.

I still have periodic MRI's. It is one way my neuro can determine if the disease is becoming more active.

If I were on the abcr's I'd want them periodically to be sure I should stay on the drug and not switch to a different one.

Afterall, you can be getting lots of new lesions and no clinical signs of it.

I guess that's why I question the emphasis placed on the MRI.

The MRI is a wonderful diagnostic tool but are doctors relying too much on them and not looking at the whole picture the way doctors had to do before the MRI.

:eek: No Lady Express I do not want to go back to them dropping us in a hot bathtub:rolleyes:

I had a MRI about a year and a half ago - first time since I was dx'd.

But, what if it the MS IS 'becoming more active' (according to the MRI), Boss? Does this really prove/disprove anything?

I listened to a Neuro's speach from a Biogen conference in Las Vegas a while ago, and he presented monthly MRI's that showed that the results are entirely different from month-to-month. Sometimes there was lesion activity, but no attack going on . . . and vise-versa. :cool:

Some people have tons of lesions, and no problems, and others have very few, but are very disabled. Does having active lesions prove that the the disease is progressing, and does not having active lesions mean it's not?

I've only had one MRI in the last 15+ years, because personally I think the MRI is only reasonably effective as a diagnostic tool. Otherwise, the results don't really tell us much anyway, IMHO.

Cherie

Lady Express, I'd go back to the hot bath test if it meant I could finally get treatment!!

Way before I started going through the diagnostic process, I purchased a lovely, deep bath with head rest, arm rests - the ultimate bathing experience. I got into this lovely, deep, hot bath and prepared to relax and enjoy. The only trouble was - I couldn't get out of it, I was so weak.

I remember telling my husband "oh goodness, I must have made the bath too hot, I'm sure that happens to everyone", who of course looked at me as though I was mad. That was the last bath I had in my beautiful indulgent bath!

I definitely think that doctors are putting too much emphasis on MRI as well - it's my understanding that even the revised criteria specifically state that the diagnosis is a CLINICAL diagnosis, ie once everything has been ruled out, it is up to the neurologist to decide even in the absence of diagnostic evidence.

Thanks Cricket and Matt.No Matt ihaven't had a thoracic MRI in the 8 years.I get lots of pain and tingling there.I also have bad problems with temp control,humidity and heat worsen spasticity as does the cold.

cricket that's my argument they should have picked up worsening spasticity and looked at why.Ovbiously it's not coming from cerebellum so it must be from spine.

However my initial examination with MS Specialist showed nystagmus and brisk jaw jerk which goes with the brain stem.I was told they thought I had a lesion in a critical area.

I have wondered about Devics/Neuromyelitis Optica as first neuro said I had 2 attacks of ON and my vision in left eye is hopeless due to optic atrophy.Also my attacks were always my legs and bladder but I would be really ill in bed.Family would call GP out and he would offer respite care:(

I've had to sort out Daughters health problems this year,she's seeing a Neuro.My Mother has another neuro condition and also a wheelchair user and has been seriously ill.So now maybe I'll start looking for answers again.

Jacqui.

i could not agree with you more. i often wonder if the importance of mri's are over stressed because it's the best tool they have at this point in time?

(i reached this conclusion after a butt load of mri's this last year....10 to 11 in 12 months to be precise)

everyone who has had ms for awhile knows lesion load does not correspond with disability status amongst other things.

We are fast becoming a Big Pharma's and some Docs worst nightmare.:D :D :D ....Getting to smart for them and becoming proactive in our own health concerns and care.....Muahahahaha!!

"We are fast becoming a Big Pharma's and some Docs worst nightmare. ....Getting to smart for them and becoming proactive in our own health concerns and..."


Arrrrr Arrrrr Arrrr Sally - how true!

It was my MS neuro who told me to find a good forum. Best thing I could have done for my care, mental health and education. We may be crazy but we aren't stupid!

Teddy:

I can't count the number of times I have hauled myself out of a hot bath only to lie down on the bathroom floor because I couldn't make it out of the bathroom. I won't give up my bath because I hate showers (tactile thing), so I have one just before bedtime. In an odd way it's a very pleasant feeling, I fall asleep faster.

It's true. At least mine is looking at the big picture enough to keep me on Betaseron.

Sally, we definitely have the doctors running scared!! :D

I had one neuro resident tell me last year she was going to give me a blood test to rule out sarcoidosis. She said to me that she wouldn't explain what that was "because you'll only go home and look it up on the internet anyway". Darn tootin' lady!! The nerve of patients - wanting to find out about diseases they're being tested for...

Cricket, I haven't had a hot bath since, I'm too much of a wuss! Plus it wasn't a good look having to call hubby to haul me out! (Rest assured I have, however had showers!!!)

Spuggs, I remember reading your story at BT1 - I can't believe you've gone through so much, and with such obvious signs, without having a spinal MRI. I hope you do start to look for answers again.

I am in the 'just drop me in the tub' club for dx.

LP was negative at the time ( but I was not in an attack at the time either). My MRI's were either not read right or they are 'normal'; I was never told.

HOWEVER: I have had clinical signs, that led to my dx. If I had gone to different Drs., most likely everything would have be taken as only isoloated incidents, not related. With continiuing with the same Dr, that was, and still is, to not give up everything taken into consideration helped I think. He found signs that I did not know about, clonus, and a couple of others that I can't remember at this time, that makes it MS.

That is my (very long) story in a nut shell. I am on LDN, for 5 months now, and am doing wonderful! I can use my hand and arm again! I am not totally exhausted every day, and I have even stayed up till 4 am talking to friends recently!

Am I perfect? NO WAY! But I feel the best I have felt in more years than I can remember.

Hi Liisa!

If you don't mind me asking - did you have evoked potentials or more than the one negative LP on your road to dx?

So glad to hear the LDN is working for you. Must be nice to have a doctor who isn't afraid to dx and treat you and who believes you.

Hope you continue to improve. :)

Cricket-

I will NEVER have another LP! never never. had a 'normal'? EP; which is to say that it showed signs? Now I am confused myself. What ever the results were, I took it as that everything was good, when it really meant that I was not having the usual responses?

Are you as confused now as me? This was several years ago now and I really can't remember how it was presented. sheesh, maybe I just need more coffee

This article shows how subjective the MS diagnostic process can be for some people.

http://msj.sagepub.com/cgi/reprint/9/5/481

Interesting artical. I saw where the techs reading the scans don't tend to elaborate, none of my MRIs talked about numbers of lesions or size and only gave vague referance as to location. On a follow up MRI all it said was same as before with a few new ones, no elaberation at all. THis is shameful.
Pat

This study utilized neurologists, not radiologists, to read and interpret MRI scans. I'm at a loss to understand why they would do this.

Same here Pat, I asked about my first MRI and was told "It's typical MSy" Hmmmmmm. I was too doped up to ask much.

My second and last MRI...I asked for a copy to be sent to my Neuro, so we could go over it, and He didn't have it there.:mad: